You Are Not Alone

January 28, 2010

One of the reasons I started this blog was to let the many families I have met, who are somewhat isolated and feel alone in their efforts to care for a loved one with developmental disabilities, know that they are not alone. The very nature of developmental disabilities can set an entire family apart from the mainstream of society. You are less likely to make friends at the neighborhood soccer match on Saturday morning. You cannot usually hire the teenager down the street to babysit while you participate in community events or go to the gym. And, it’s just plain difficult to hear how someone’s cheerleader daughter just made the high honor roll while you’re struggling to toilet train a teenager or are running to therapies instead of ballet class.

So five months ago I figured out how to “do” a blog and started writing about caring for Lauren. I have some gizmo on the blog that tells me what country, state, or city people who visit the blog are in. I have been astounded at how far the blog has reached out, and I thought that you needed to know how “not alone” you actually are. The blog has had visitors from eleven countries – U.S., Australia, United Kingdom, Canada, Denmark, Czech Republic, Italy, Belgium, Argentina, New Zealand, and Turkey. In the U.S. there have been visitors from fifteen states and in Australia from three of their six states.

I find it amazing that my twice-a-week posts have traveled so far around this planet. People are reaching out all over the world to find others who share their fears and frustrations, their successes and failures, their hopes and their dreams. The knowledge that you are all out there traveling this journey with me is very inspiring, comforting, and humbling.

Cleaning Out the Files

January 26, 2010

I seriously dislike filing. My “to-be-filed” folder had become my “to-be-filed” box and when that started to overflow, I just couldn’t put it off any longer. Since my file drawers were also basically overflowing, the time had come to weed out all the unnecessary stuff taking up all the room.

Since most of my files seem to be about Lauren’s education, social services, and medical needs, this onerous job became quite a trip down memory lane. Drawer number one held memories of preparing for IEP meetings armed with copies of education law and regulations. It held copies of letters to administrators too blinded by bottom lines and old habits to see the child that didn’t need even more challenges on her way to adulthood, and reports from “experts” that thought they knew my child after spending twenty minutes with her.

Drawer number two was my advocacy drawer. The drawer that helped me prepare for all the potholes and skirmishes that would befall us. It held all the articles, regulations, and printed material I could get my hands on in order to enter into each battle with enough ammunition and armor to win. Most of the material was now dated and of no help to anyone. So now instead of info on Positive Student Profiles, transition rules, and curriculum, this drawer will hold info on housing, accessibility, and trusts and estate planning.

Drawer number three is the dreaded medical insurance and expense drawer. Besides the endless Explanation of Benefits forms, there were the remains of successful and futile efforts to try and meet Lauren’s medical needs. The equipment denials which took months to sort out and the requests for reports, recommendations, and guidance to weather each new crisis, bring back memories of scary, frustrating days. More recent files contain paperwork demanding a switch to generic meds rather than name brand. They want me to prove that my child’s seizures do not respond as well to generics as name brands. They want to risk the tenuous control that we currently have over these evil occurrences that take over Lauren’s body and render her exhausted. Looking back at pictures of Lauren when she was five or six years old, there is a light in her eyes, a connection with the world, that hundred of seizures over the last 24 years has dimmed. And, a pharmacy manager in some big company doesn’t care what her doctor prescribed...he’s willing to cause that light to dim even more.

And then there’s drawer number four. That’s the drawer that holds the files that tell the story of our lives together – George and mine. Mortgage papers, investment info, and other legal detritus take up less room than you would think twenty-eight years of togetherness would need. Way at the end of the drawer are the “dream” files. They are the files holding articles, brochures, and maps of destinations we hope to some day visit and explore. Up until recently, information only went into those files, rarely came out. Since Lauren has been self-directing and when caregiver positions are stable, we have been able to revisit our honeymoon destination, travel to friends we have been promising to visit for about 15 years, and getaway for a couple days here and there to explore places that were out of our reach before. Lauren has been safe and well-cared for, and we have been able to realize some dreams, before we are too old or infirm to enjoy them.

So, now my hanging files can actually slide back and forth in the drawers. Now, there is room to fill them up again with the remains of new battles, new successes, and preparatory data for the new challenges that we will face in the years ahead. But best of all, at the end of the bottom drawer, there is room for new dreams.

Early Morning

January 21, 2010

In the cold, dark early morning that is five a.m., Lauren decided to begin her day. No amount of tucking in, or sweet imploring, or stern reminders that “it isn’t time to get up yet” could convince her to go back to sleep. So, if Lauren’s day begins, then so does mine. With thermostat preprogrammed at sixty-three degrees until six a.m., the house was downright frigid. I bundled Lauren up against the chilly air, and overrode the program. I wheeled her into the great room and turned on the morning news. Somehow it’s comforting to have proof that someone else is up at that hour. With warm throws, we settled into Lauren’s favorite chair, a recliner/loveseat, and listened to the ills that had befallen the world since we closed our eyes the night before. I tried to doze but could tell that someone was watching me. I would open my eyes to an innocent smile and wide-awake eyes looking back at me, illuminated by the glare of the TV. Around six-thirty I caught her yawning and convinced her to lay back. I turned off the news and turned on some music. She finally slept and I dozed alongside her, afraid to shift my position lest I wake her. Seven-thirty soon arrived and it was time to get up so that we could make sure her medication was on time. It was a bright, sunny morning. She was happy to get on with her day. I was just tired.

What is Self-Direction?

January 19, 2010

What is “self-direction”? If you’ve heard the term or have been following this blog and you’re not really sure that you understand what self-direction is, the following should provide the information you need.

There is an excellent explanation of the basics of self-direction on the TASH (The Association for the Severely Handicapped) website. It was written by a group in the State of Maryland but is specific to the topic rather than the state.

If you Google “self-direction”, “self-directed services”, “self-directed supports”, or “self-determination” you can access information from many states as well as countries all over the world. In New Jersey, we have several self-directed programs serving individuals with developmental disabilities. If an individual with DD currently lives in the community, they will be interested in the Real Life Choices program and the Personal Preference program.

To find out about self-direction in New Jersey, go to the Division of Developmental Disabilities website at  You can access specific information about Real Life Choices on the Neighbours, Inc. website at  Neighbours provides support coordination for the Real Life Choices program.

On the Family Support Center of NJ’s website,  you can get even more detail on Real Life Choices as well as search for providers of services to individuals who are self-directing, find out details on how self-direction works, and find answers to many other questions. There is also a link to information on just what services and supports your budget can be used to purchase and a link to a sample Essential Lifestyle Plan (ELP). If your child went through school in the U.S., they probably had an Individualized Education Plan (IEP). The ELP is the planning document used in the self-direction process. I often felt that schools considered an IEP just a bunch of pages required by the government, rather than a useable, working document to guide the education of a child with special needs. Thankfully, the ELP is a positive, common sense approach to thinking through and meeting the needs of an individual with DD.

To find out more about the Personal Preference Program, which is available to individuals in New Jersey who are eligible for Medicaid Personal Care Assistant services go to

A historical note: self-directed services and supports are based on the Five Principles of Self-Determination developed in 1996 at the University of New Hampshire by T. Nerney and D. Shumway. They are:

The opportunity to choose where and with whom one lives as well as how one organizes all important aspects of one’s life with freely chosen assistance as needed

The ability to control some targeted amount of public dollars

The ability to organize that support in ways that are unique to the individual

The obligation to use public dollars wisely and to contribute to one’s community

The recognition that individuals with disabilities themselves must be a major part of the redesign of the human service system of long term care.

I hope this information has helped you understand the ideas and processes involved in self-directing services. From what I have heard and read in the past few years, this is the way all services will be provided in the future. I think this will help our communities and neighbors recognize the basic civil and human rights long denied to individuals with developmental disabilities.

The Joys of Handicap Parking

January 14, 2010

Temperatures are supposed to be above freezing for the next few days. Maybe some of the snow and ice obstructing the handicap parking spaces will melt. Yes, its winter again and yes, they’re plowing the snow into the handicap spaces again. Anyone who knows me knows that this is a pet peeve of mine. Of course, there’s also a law against it. But that doesn’t seem to stop anyone from pushing that snow right in between those blue lines. Some places make an attempt at cleaning out the spaces but still leave some snow up against the curb. So then people park further over to allow egress and encroach on the access (hatched lines) area. That access area is critical if you are using a van with a ramp.

So parking in winter presents additional challenges than those that already exist the rest of the year. There never seems to be enough spaces and Lauren needs a “van” space – one wide enough to open her ramp – an extra eight feet alongside of the van. There are even fewer of those spaces. And what do we do if we can’t find an acceptable space? We go to the “uninhabited” area of the parking lot and use two spaces. Lauren is then exposed to wind, cold, rain, snow, and heat for a longer period of time while we push the wheelchair through slush, puddles, and vehicles entering and leaving other spaces. Ever try to hold an umbrella over a wheelchair? One of you is going to get wet, and if the wind is blowing...both of you. And what do you find when you return to the van? People actually take the time to write nasty, swearing, notes and tuck them under the windshield wiper commenting on your parking talent! Of course, the handicap license plates and sign on the side of the van escapes their notice.

Well, maybe by Saturday that nasty white stuff, rather gray now, will have melted away. Unfortunately, I hear it’s going to snow again on Sunday.

Some Thoughts on Change

January 12, 2010

Continuity gives us roots; change gives us branches, letting us stretch and grow and reach new heights. ~Pauline R. Kezer

Our only security is our ability to change. ~John Lilly

Things alter for the worse spontaneously, if they be not altered for the better designedly. ~Francis Bacon

The only man I know who behaves sensibly is my tailor; he takes my measurements anew each time he sees me. The rest go on with their old measurements and expect me to fit them. ~George Bernard Shaw

I’ve been thinking a lot about change lately. In a previous post I talked about Lauren’s reaction to change. Basically, she doesn’t like it. It’s hard for her to understand. Routine and structure in her life helps her to be secure and trusting of those around her. I react to her need by training DSPs to do everything the same. For example, I teach them exactly the order and technique to use to give her a shower. Trying to keep everybody doing everything the same way is not an easy task. And, someone pointed out to me recently, that it may not be the best thing for Lauren.

They noted that Lauren will have people providing her care for the rest of her life. I will not always be in control. Am I reinforcing inflexibility that will make life harder for Lauren in the long run? Maybe. I thought I was teaching Lauren’s caregivers the way that Lauren liked things to be done. But what I actually may be doing is teaching them the way that I like things to be done. Somewhere over the years, in my mind, the two became one. I’m sure there are things that are important to Lauren and some things that really aren’t. I just don’t know what those things are, so I control everything. Maybe I should let her caregivers bring their own ideas and preferences to tasks and let Lauren’s reaction speak for her acceptance or displeasure. Of course, there will always be some health and safety issues that will need continuity and structure, but not everything does. Maybe that give and take between Lauren and her DSPs is part of the relationship that they need to build.

I think major changes – the loss of a DSP, large disruptions in her schedule, etc. will always be difficult for Lauren. But maybe if she can find acceptance for the small changes, she will begin to find tolerance for the large ones.

Is a Substitute the Answer?

January 7, 2010

As I discussed in my last post, change or any disruption in Lauren’s basic schedule is very difficult for her. But life happens. DSP’s get sick, take vacations, have doctor’s appointments. Vacancies occur. I’ve been brainstorming about how to lessen the effect this all has on Lauren. Having a floating substitute would help. Someone who could fill in as needed, any shift, any day.

Traditional providers have to have people who can either substitute or work overtime. In self-direction, that’s a lot harder to arrange. First of all, the substitute needs to be as familiar with and as educated about Lauren’s care as her other DSPs. If they are only working occasionally – that is hard to accomplish. Finding someone who is flexible enough to cover all shifts, again, is difficult. Of course, you could have more than one person in the substitute position, but that makes it even harder to keep them up-to-date on Lauren’s care, since they could go months without working. Under our one funding stream, if a DSP does not work in a certain period of time you have to redo some paperwork and drug testing. Setting up a substitute seems like a difficult and cumbersome proposition.

As for overtime, you can work a certain amount into your budget if your funding allows, but it really needs to be budgeted ahead of time and you have to have DSPs who are willing and available.  Additionally, Lauren's care is extensive and draining - I don't want to burn out the wonderful people I already have.

I’m wondering what other families may be doing. Has anyone tried to set up a substitute DSP? Have you been successful? Does anyone have a better idea or approach to the problem?


January 5, 2010

Ahhhh, the silence. Lauren is out with her DSP and it is blessedly quiet at home today. Silence has been in very short supply lately. When Lauren is unhappy, bored, upset, or PMSing, she makes noise, a repetitive, insistent, voluminous vocalization. I know she is trying to communicate something. But beyond providing food, a new activity, changing her music, or position, I don’t know what to do to satisfy her, I cannot make it stop. Lauren weathers minor changes in schedule or care very well, prolonged change...not so well. The holidays wreak havoc with her schedule. There have been many days in the last two weeks when staff were off. They have families, too. Plus, one has been out sick for most of two weeks. I explain what is happening to Lauren, but she either can’t or won’t understand. The more she doesn’t weather something that I have no control over the more frustrated I become. The more noise she makes, the more frazzled my nerves become. I sit with her and try to watch a movie – she makes it clear that she is not pleased. We play a game – she seems bored. With wind chills in the single digits, we’re not going outside. George and I put her in the van and take her for a ride. She’s happy with that until we pull back into the garage. And, the noise begins anew. We’ve attempted various methods to help her communicate but she has not responded. She actually seems to understand the concept of using pictures but is unwilling to use it to express herself. We will try it again.

Lauren is usually fine as long as she is constantly on the move. That is not practical or readily achievable, especially in New Jersey in January. I know the noise is her attempt to communicate her confusion, frustration, and displeasure but it is not productive beyond producing the same results in me. But today it is quiet. I attempt to catch up on the things that over the past few days, Lauren’s needs have kept me from doing. In less than an hour she will be back home. The silence will be broken.